Tuesday, August 11, 2015

Still waiting...

It's the BIG day!  We left the house right on time at 7am.  Traffic was a breeze and we checked in early (thanks to Tom).  Early!  What a time waster!  haha! Kidding!

Her ENT (Dr. Preciado) came in to chat with us after all the check in stuff was done.  He scared us a bit when he said he was thinking about having her sleep here capped for one night, then if that went well, decannulate tomorrow, then stay for a couple of nights.  ACK!!!  We went over the sleep study report a little and we told him we would rather decannulate today (of course).  He said he would do the laryngoscopy and we'd chat after.

Before he left I grabbed a picture.  Right after Harlie was born, they whisked her away and took her next door to Children's, where Dr. Preciado went into the OR with her and was able to intubate her.  He called Tom just a few minutes after she left and asked for consent for the procedure over the phone.  It was crazy.  He saved her life, so we dig him.

We met the two anesthesiologists who were on her case and they took her on back.  She just said goodbye, grabbed Mikey (her Teenage Mutant Ninja Turtle stuffed animal) and walked right on back - smiling the whole time.  She's such a brave girl.  And I love how incredibly independent she is becoming, despite receiving SO much attention in her life.

Knowing that it was going to be a quick one, we sat in the waiting room instead of going to get something to eat.  We probably waited about 20 minutes or so and they called us back to a conference room.

Dr. P came in and said that it went really well.  Her airway looks great, as well as her vocal cords.  He could see a big improvement since her last jaw reconstruction.

The only negative is that her mouth can only open a little bit.  And that has actually gotten worse.  Because she can't open her mouth, they couldn't get a rigid bronch to go behind her tongue.  And in the process of trying, they think they loosened one of her teeth.  He said that he would have likely knocked a tooth or two out trying to force it, so he didn't.  And in the process of the anesthesiologist trying to get lidocaine down there, he accidentally hurt her lip.  There's just not a lot of room to work in there.  Which, I totally understand given the struggle it is to get a toothbrush in there.

The reason in particular that her small opening is a negative is that she will not be able to be intubated through her mouth.  What scares me about this is if we're in a car accident or something like that, no EMT would have what they need to intubate her.  So, we're just not going to think about that, because there's just nothing we can do.  She can't live her life trached just for that.

So, he said he is fine with proceeding with decannulation TODAY!  But, he wants her to stay in the CICU for two nights, just to make sure she's okay breathing without it.  I am trying really hard to keep it together.  But, I feel like I'm on the verge of bursting into full on tears at any moment!

It is now 2pm and she is still in recovery, waiting on a room in the CICU.  Tom can't stay here for two nights (he has to work), so he's working on getting coverage for the boys, and the logistics of him going home and then returning to come and get us on Thursday.

So, for now we just sit.  And wait.  UGH!  We want to just reach over right now and pull it out.  Then throw it across the room!  But, we can't.  Just a few more hours, and it will be done.  I can't wait for that post!!!!

Thank you for all the incredible amount of love and support today!  I had to stop looking at Facebook because you were all making me cry!

Love to you all!
Christy xo

1 comment:

Susan said...

This is so exciting! Although you may want to throw it across the room, make sure you save that last trach as a momento. Soon you won't believe she spent nearly 9 years trached. And remember if there is a terrible car accident they can perform an emergency tracheotomy if they need to. Fingers crossed that she sleeps well. If one night goes well really well they might let you go a day early. Fingers crossed. XOXO.